Last night, I sat out on the porch of what may be the oldest tavern left in Rockville, Maryland, and had beers with some college friends. It was therapeutic and so long overdue. But I got home late, setting me up for a cranky day today.
I walked out of Target today, where Mom was buying the kids their school supplies, because I got a call from the pharmacy that handles my cancer drug shipments, to schedule a date for them to send me my bottle of Mekinist.
Dr P and her staff obviously took care of me once again, because as before, the pharmacy rep started out telling me I’d have a $10 copay, but on his further investigation into their computer system, the copay magically evaporated. So far so good.
The call took an excruciatingly long time, with the rep blaming his computer for the delays, but I had to stay on to have a word with the pharmacist at the end. I figured this would all be pro forma. After all, I’d read up about Mekinist online and knew the combination of it with Tafinlar would be helpful. Right?
Wrong! I’d been kind of distracted. I found out that I’d be starting the two-drug combo treatment about five minutes before leaving for a week’s vacation. I didn’t spend a lot of time thinking about it, because… I guess that’s how I cope?
The pharmacist today said, “Now, Mekinist carries a risk of cardiomyopathy, so you’ll need to have a baseline EKG.”
What??? I heard cardiomyopathy, and instantly thought of my friend’s baby, who died of this condition, at three days old. Could this medicine, which they are using to shrink my brain tumors, have the same effect? Why exactly do I need to start fucking with my heart, the infallibility of which is, at this point, perhaps the only thing I’ve been able to truly count on in the past year?
The medicine is coming in tomorrow, and has to live in the fridge, and I’ll take it on the days I take Tafinlar (every other day). But – BUT – I am not popping even one of them before having a more reassuring conversation about side effects with Nurse Practitioner R or K. Or even Dr P.
Up until now I’ve been focused exclusively on the result of my next MRI, in mid-September, and then the result of my next CT scan after that, hopefully showing shrinkage/disappearance of the brain tumors, and no new metastases, respectively. I desperately want to stop taking the anti-seizure drug I’ve been on since April, which makes me totally spacy, exhausted, and possibly also fat (but I’ll own up to personal choices exacerbating that). My hair has been falling out a lot, not that anyone would notice, because I’ve always had plenty of hair to spare. My vision still hasn’t completely cleared up after my bout with medication-induced iritis, and now the other eye has fuzzy vision. I had a pedicure the other day, and the callus removal portion of it was excruciating.
I so badly need things to get less complicated, not more. I realize I may not have a choice, if I want to come out of this alive, but for the love of pizza! Let’s leave my heart out of it! (I’m trying to use less bad language. It really bothers Young J when I curse.)
I had a rough afternoon with the kids. I was exhausted when we got back from the school supplies outing, and they wanted to go to the pool immediately. I took a nap for a little while, then they came in and woke me and it just spiraled into chaos for about a half hour before we finally got to the pool. So frustrating. I know it’s the extinction burst of summer vacation that’s making them so crazy. But I’ve really had enough. More than enough. I went on strike before dinner, and the kids helped Mom prepare dinner. Young A knew how to trim asparagus (he learned at school). Young J whispered to me his secret to delicious broiled portobello mushrooms, which I will divulge here just for you: “You need to use an extremely large amount of salt. And soy sauce.”
By dinnertime I was calm again (and exhausted, having served as non-swimming Young A’s ferry boat across the pool about a dozen times). I even sat down at the piano and played some Chopin I hadn’t touched in years. (It had its moments.)
I’m worn down to the nubs, just in time for my promised outing to the National Zoo with the kids tomorrow. Time for me to get to bed. Last night I found a teddy bear on my pillow here, and clutched it all night, gratefully. I’ll be glad to have him there tonight too. (Missing you, J.)